CancerCompass message board discussion started by Mazzy on 8/2/2006 http://www.cancercompass.com/message-board/message/all,6280,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello I am new to the message board. I am looking for anyone who may be using the drug Nexavar. My Husband has RCC and it has mestatized to the lung and duodeum. He has taken intron A (interferon) but has had reactions to it. He was diagnosed 2000 and had a radical nephrectomy done. 2 years later the cancer came back in the lung and duodeum. Nexavar has been approved in Canada now and we are thinking of asking our Doctor about it. My husband was to go on a trial for Sutent however the trial closed before he could get on it. Wishing everyone well and looking forward to your feedback. Mazzy Mazzy Wed, 02 Aug 2006 00:00:00 GMT i have been on it, it has shrunk my tumor i have had very few side affects sore feet, body sore, losy the hair on my arms and eyebrows but it growing back i hopr that the helps your husband Goldpan Thu, 03 Aug 2006 00:00:00 GMT Thank you so much for responce. It doesn't seem like the side effects are any different than the interferon and bonus Nexavar is a pill. We are very excited about this and we go to the doctor on the 25th to see if my husband can get on it. I am sure she will put him on it so I am just putting feelers out there. Nexavar was just approved in Canada on July 31 and I am sure there are many excited RCC patients. Mazzy Fri, 04 Aug 2006 00:00:00 GMT My mother has been on Nexavar for almost a year. She had stage 4 RCC. The medicine has shrunk all of her tumors tremendously. She is now down to only 2 tiny tumors on her liver. I believe this drug saved her life. I hope it is an option for your husband. The side effects are mainly hand and foot sores, diarrhea, and in some people hair loss. But when you see the benefit from the medicine, it makes the side effects a small price to pay. If he is able to start the medicine and does have the hand and foot sores, soaking morning and evening in epsom salt helps a lot. I wish you luck! Keep us updated... Cpurd Sat, 05 Aug 2006 00:00:00 GMT Thanks Cpurd. I am very excited about this and I am sure our Oncologist will put him on it. He has done extremely well on interferon however after the second time he took the reaction they feel he can't take that anymore so when I heard that Nexavar was approved it has given us great hope. I guess it is a very expensive drug however Bayer is checking to see how much our personal insurance will pay and then they will try to get us assistance to cover the rest. I am glad it is working so well for your mother. You are right hand and foot sores are minor if it works. I am so glad I stumbled onto this message board. Thanks again for replying and God bless your mother. Your reply about her mades me even more excited. Can't wait till Aug 25th when we see the doc. Mazzy Sat, 05 Aug 2006 00:00:00 GMT There is an email support list specific to kidney cancer. If you join it (see http://cancerguide.org/kofaq/ ) and ask this question you will find others who have taken Nexavar. Trishpm Mon, 07 Aug 2006 00:00:00 GMT Yes, Nexavar is an incredible drug and a giant step forward in the treatment of RCC. Experiencing my third active bout with renal cancer which now spread to my lungs in August, 2005, they tried interluken, but was way too sick. Tumors were too large and too numerous to operate. In December 2005, they told me there was nothing more they could do for me. In January, with the recently FDA approval, I began Nexavar. 8 months later, most of my tumors are completely gone, and the ones that remain are very small. My latest CT showed the small tumors are still there, but nothing has grown nor spread. I truly believe this drug (and prayers) saved my life. I try to tell as many people as I can about my experience. Side effects are mild, mostly pain in my feet, but is a small price to pay. I have been reading that they are also considering Nexavar for lung cancer and melanoma (skin cancer). So any one out there ..... at least mention this to your oncologist!! Mary C. in Wisconsin Maryinwis Thu, 21 Sep 2006 00:00:00 GMT Hi My wife started Sorafenib [200mg a day]last Friday, 13th Oct 2006 [ and they say we Irish are superstitious!!]. Had left kidney remov ed in April past, symptons returned Aug 06, small specks in her lung, liver and lower spine. Radiotherapy to spine, still with pain to lower back, on Voltarol 75 Mg Slow Release 2 a day to ease pain. Early days yet for Sorafenib, of course, but no obvious side effects. However she had already been sick, vommiting, etc prior to treatment [for about a month]and lost her apetite. Weight loss and restless nights,etc Three days into treatment and she had a sick free day, Monday 16th Oct. We believe we broke the cycle by her not sleeping so much during the day, and eating little and often, and poss. to do with confidence in the new drug. We have found this resource, Cancer Compass, Messages and tips, etc very useful, and giving us a clearer understanding of what we may have to endure. I say we because those with partners caring .... you will understand. God bless you all and may He give our Oncologists wisdom and strength. Tommysea Belfast n Irelan Tue, 17 Oct 2006 00:00:00 GMT